Mighty Meghan's Journey: September 2014

Tuesday, September 16, 2014

September is a BIG month for our little lady!! The month of September is Hydrocephalus awareness & Chiari Malformation awareness month AND September 15-21 is Growth awareness week. We walked to raise awareness of Hydrocephalus on September 7th. Our team, Team Mighty Meghan, had 19 walkers and we raised $800 as a team, and all of the Minnesota teams combined raised $55,684 (to date)!!! All of the money raised goes towards research to find a cure. This was our 2nd year walking to support our Mighty Meghan, and everyone else affected with Hydrocephalus. A huge thank you to those to walked, donated, or both! We are forever grateful for your support!

Meghan started Pre-school on September 2nd. AHHHH!! It's so crazy that my baby is in school! There were some big tears the first time she rode the bus, but otherwise she seems to really like school! There are 6 kids in her class. She has a bus buddy, Wyatt. She has OT/PT once a week and speech twice a week, while at school. Her speech is really coming around!!! Since school, she has learned the words me & you.

We've always known that because of Meg's neurological conditions, she has a higher risk of having a seizure than typical people. She had her first seizure the evening of September 12. She had a febrile seizure, lasting between 8-10 minutes, which was caused by a sudden spike in her temperature. It was a very scary night for Jeff and I, and it was hard to see what a seizure does to a person. It took her a while to fully recover from it. I spoke with neurology, and because of Meghan having this seizure, they are moving up her MRI to be done as soon as possible. At this point, a shunt malfunction is not a concern because she is not running a fever, irritable, vomiting, or hard to wake up. They would also like Meghan to have an EEG to look for seizure activity. Most likely, she will have a 1 hour EEG done. She will be prescribed Diastat (a rescue medication) incase of another seizure. The EEG and MRI/skin biopsy have not been scheduled as of yet, but should get scheduled this week.

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This blog has been created to keep friends and family updated on the medical journeys we embark upon with Meghan. We will share updates on doctor appointments, therapy sessions, how Meghan's life is affected and how life as a family is affected. Please Note: The medical information on this blog are from our experiences and should not be substituted for diagnosis, treatment or medical guidance. Always seek medical advice from your doctor.

When Meghan was 9 months old, she was diagnosed with Hydrocephalus (secondary to Aqueductal stenosis) and Chiari Malformation - both are incurable brain conditions.

At 13 months, Meghan was diagnosed with Syringomyelia throughout her spinal cord.At 22 months, Meghan was diagnosed with Hemihypertrophy of the entire right side of her body with a secondary limb length difference involving her legs, and Grade 2 Hydronephrosis of her right kidney.

Other diagnoses Meghan has are: failure to thrive, macrocephaly, global developmental delays, apraxia of speech, hypotonia, syndactyly, degenerative disk disease, growth hormone deficiency.

Hydrocephalus - Cerebral spinal fluid (CSF) surrounds and protects the brain and spinal cord. Hydrocephalus occurs when there is an abnormal accumulation of CSF within the ventricles of the brain. As CSF builds up, it causes the ventricles to enlarge and can increase pressure within the brain. There is no known way to prevent or cure hydrocephalus. Hydrocephalus is treated surgically by the insertion of a shunt. A shunt is a flexible tube that diverts the flow of CSF from the head into another region (most commonly the abdominal area) of the body where it can be absorbed. Shunts commonly include valves to regulate CSF flow based on pressure and/or body position. If left untreated, hydrocephalus is usually fatal.

Chiari Malformation (CM) - A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the bottom of the skull toward the spinal cord, putting pressure on the brain, skull and spine.

Syringomyelia (SM) - A chronic disorder involving the spinal cord. The condition occurs when cerebral spinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx. This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

Hemihypertrophy - A condition in which one side of the body, or a part of one side, is larger in size than the other. Children with hemihypertrophy have an increased risk of developing certain types of cancer, including Wilms tumor (a childhood kidney cancer) and liver cancer. Children with hemihypertrophy may also develop scoliosis. For those that have a secondary limb length difference, there are two main surgical options, shortening and lengthening. Epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up", is performed on patients still able to grow. Bone resection is performed on patients who have no growth left and involves removing part of the bone. Leg lengthening procedures are more painful, involving the insertion of pins to be turned, moving parts of the bone apart. This process is reserved mainly for patients with a discrepancy greater than 4 cm, although some leg lengthening procedures are now done cosmetically. Non-surgical options include attachment of a lift to the shoe, allowing the patient to walk normally.

Hydronephrosis - aka water in the kidney - is swelling (dilation) of the urine-collecting structures of one or both kidneys due to obstruction of urine flow from the kidney. This can impair kidney function. If left untreated, this condition will progress to kidney failure.